‘The Doctors Are In” – 03.01.12

On Thursday March 1, Autism Speaks Head of Medical Research Joe Horrigan, MD, was joined by autism specialist, dentist José Polido, DDS. Here is the transcript.

2:59

We’ll be starting very shortly.Thank you so much for joining us. Joining Dr. Horrigan today will be guest hosts pediatric dentist José Polido, DDS, head of dentistry at Children’s Hospital Los Angeles, one of our Autism Treatment Network (ATN) centers. Dr. Polido helped develop our new ATN tool kit for dental professionals.Dr. Polido is joining our regular co-host, child psychiatrist Joe Horrigan, Autism Speaks assistant vice president, head of medical research. Our Chief Science Officer Geri Dawson is away today. She will be back for our next chat, April 5, along with guest host gastroenterologist and autism specialist Alessio Fasano, M.D., director of the Center for Celiac Research at the University of Maryland School of Medicine.

Hi, this is Dr. José Polido, I am a pediatric dentist, assistant professor at Children’s Hospital Los Angeles and USC, glad to be able to join you on this chat.

3:03

Comment From william

good afternoon

3:03

Comment From Winnie Schroeder

Hello

3:05

Advance question from Carolyn:My twin daughters both have asd diagnosis’s , at one of the girls mdt/ iep yesterday the “team” informed me that keeping her verification as Developmental delay would provide her with the best services versus utilizing her Aspergers diagnosis. Is this true? Also in her information they used the terminology ” autistic like behaviors indicating Aspergers.” instead of Aspergers diagnosis as they listed her diagnosis’s of generalized anxiety and phonological disorder, those were not rephrased ” like” anxiety or phonological. My daughter is 6 yrs old. How does early intervention factor in when the school chooses not to ” label” her with autism?

3:08

The doctors are typing furiously. …

3:09

Dear Carolyn: I would ask the Special Ed coodinator why they are averting the use of an autism diagnosis. There are hopefully good reasons for taking the approach that they have recommended. A lot of times the optimal approach , in terms of the actual diagnois used for an IEP, is idiosyncratic to the school system, and sometimes it is to optimize the actual class placement and array of services for the youngster. Either way, they need to provide a sound rationale for the diagnoses they have chosen to institute the IEP

3:10

Comment From Guest

My son is autistic. He is 3 years old. We are working with him on brushing his teeth… but he won’t spit out the tooth paste. Any suggestions? He also has a feeding tube and many GI problems, so we are concerned about him swallowing the tooth paste.

3:13

Hi, thanks for the question. Although fluoridated toothpaste can be particularly helpful in preventing dental caries, it is important to remember that the most important part of oral hygiene is the toothbrushing to remove plaque. You can try using very minimal amounts (smear) or various types of non-fluoridated toothpaste if you think the flavor will help you with brushing, but it is ok to skip the toothpaste altogether if you think it will cause more problems with GI if swallowed. The decision can be made together with your dentist depending on how at risk for getting dental cavities your child is.

3:14

Comment From Tash Gilbert

Is hurting your baby sibling constantly part of Autism or could that be something else? Also only 4 hours a night every night could that be a brain problem?

3:16

Dear Tash: Most likely there is something else going on. It is possible that your youngster with autism is trying to acheive something, such as shaping your own behavior, or trying to communicate (if he/she is nonverbal), through his/her agressive behavior. Either way, it is important to keep your youngest one safe, for sure, and that can be exhausting, I know. Also, there is no question that middle-of-the-night awakening can heighten a child’s irritability and diminish his/her threshold for aggression. This type of insomnia is quite common in autism and it often requires working with a sleep specialist if it is severe (e.g. 4 hours of sleep or less per night). The good news is that there are a range of behavioral approaches that could be helpful and there may also be a role for medicines to help with your child’s sleep continuity

3:19

Comment From Marsha

My grandson is 6 yrs old. Mildly autistic and has PDD, OCD, etc. School is working with us. However insurance is not. They do not believe he needs help. We’ve had him at a stress center, several doctors, etc. They are weaning him off his medicine as they think it is too strong. In the meantime, what are parents suppose to do when they are trying everything and we have to fight insurance companies to get this covered. We live in Indiana

3:21

Dear Marsha: This type of problem with insurance coverage is increasingly common, espcially with marginally adequate insurance policies. Your grandson’s parents should definitely contact HR at their employer to let them kno what is going on, and to ask them to intevene, if need be. Also, the insurance company should have a contact number that the physican can call to contest the insurance company’s decisions, and there is always the possibility of contacting the state insurance commisioner, as well, to make a formal complaint about the insurance company’s failure to provide ‘medically necessary’ coverage. You should always document the name of the individual at the insurace company who you spoke to, as well as the date and time.

3:22

Comment From deborah

my 4 year old autistc grandson will not brush his teeth or let me do it. up til 6 months ago he would allow me to do it. i was unable to take him to his regular dentist as she was on a protracted bed rest with her pregnancy. i took him to another dentist tat had been recommended by a friend and the experience so frightened him that nhe will not allow me to brush his teeth. i am currently using a toothbrushing PEC and sometimes he will allow me to touch his front teeth with a brush but that is all.any suggestions as to how i can get his teeth brushed.he gets flouride drops for his secondary teeth but has not had his last routine fluoride treament due to this experience. any suggestions?

3:25

Hi, many children with autism do not respond well to change in providers or routine. I would work in trying to create a routine at home and attempt to get him back to his old behavior, allowing you to brush his teeth. Meanwhile, consider a discussion with your dentist (when she returns or a colleague) about possible behavior management techniques, desensitization and sedation alternatives so that the procedures go smoother, since he might benefit from more frequent visits if you are not able to provide ideal home care. The Dental Toolkit will help you learn more about sedation alternatives. Also important is to control the diet, avoiding sugary foods or frequent snacks since you are not currently being able to clean the teeth. Patience and perseverance will be very important at this age so that you can get him back into good habits.

Dr Joe, are we any closer to the cure and how is medical research going?

3:30

Dear Mom of Autistic Son – I wish I knew your name so I could answer your question poperly. I definitely feel like we are getting closer although we are not quite there such that I can use something like the word ‘cure’. We are incredibly busy here, in tems of our medical research efforts, and I am very hopeful. Much of the reserach work that we are either helping to fund, following closely, or initiating ourselves is leveraging the recent advaces in areas such as molecular biology, and genetics, and in some ways the collaborative work that we are doing with closely aligned organizations (such as those working with individuals affected by Fragile X, Angelman, and Rett) are synergizing our efforts, because there is ofetn a clear bridge between syndromic (eg. Fragile X) and non-syndromic developmental disorders (e.g. autism) (in plainer terms, there is a lot of shared biology, and we are definitely using the knowledge gained from this to our advantage, in terms of our current research). I also think tht the second half of 2012 will be partculary importnat in terms of the findings that will be announced in some ongoing clincial trials that will be relevant to you and i and everyone reading this. I will talk more about this in the upcoming months….

3:31

Comment From Ana

My son has aspbergers and I can not get him to brush his teeth cuase it gags him he says. He is 9 and needs to take care of his teeth! what can i do to make him realize just how important it is?

3:31

To work around gagging reflex, you might want to try different toothbrush types (smaller heads, softer bristles) and techniques so that you minimize the toothbrush going too far and causing the more severe gagging. Also, look for the time of day where he might be more relaxed and not very full on his stomach. It is OK to take your time and brush really well once a day without worrying about brushing perfectly after each meal, so long as you are controlling his diet to avoid sugary foods.

3:35

Comment From H Jul

Hello and thank you for this oppertunity. We have a 3 year old boy with autism and we are taking some beginning steps into biomedical treatment with a new doctor.Wanted to know if you have some recomendations or warnings recarding some of the known and common steps in these treatments? Thank you

3:36

Dear H Jul: this is Dr. Horrigan – the most important thing is to ask at each step of the way ‘what is the rationale?’ for the various diagnostic tests that might be recommended, especially if you have to pay out of pocket for them or for some of the customized treatments that might not be covered by insurance. I encourage parents to ask, “can you walk me through the quality of the evidence to support this approach?” and “what is it about my child that makes you think we need to do this test or take this supplement (as an example?” “What about my child’s presentation made you think of doing that, or recommending that?”

3:39

Comment From Valerie

My son is autistic and he is 8 almost 9 years old. He is an extremely picky eater and is very selective about what goes in his mouth. He will look, smell, feel and maybe lick something before he eats/drinks anything. He has gotten better in the past year and brushing his teeth has become less of a chore, he even started using an electric tooth brush yesterday which I think will help with his sensitivity (we struggle with hair cuts). Anyway, do you think that OT and dental care should go hand in hand in these cases? Is there a resource list of special dentists for my area (southern IN)?

3:41

Congratulations on the positive results with the electric toothbrush! We have worked closely with OT and other behavior specialists on oral health topics to maximize the improvement in behavior, including multiple desensitization visits to the dental clinic with the OT present, but most importantly, make sure that they are not utilizing sugary foods (gummy bears, etc) as positive reinforcement, which I have seen a little too often. I would refer you to the American Academy of Pediatric Dentists atwww.aapd.org to find additional resources in your area.

Dear Lissy – this is Dr. Horrigan – the short answer is ‘yes’. Most adolescents need a lot more sleep than they normally get, and their sleep debt is often exacerbated by earlt starts on school days. Our schools here where i am now start at 7:40 AM, for example, which can be really challnging for all adolescents and their parents. Also, individuals with epilepsy, if they are still prone to having seizures, are definitely prone to having a diminished threshold to seize (e.g. to have more seizures) when they are fatigued or tired. So the these two things intersect with one another, in terms of risk. I would aim for at least 9 hours of sleep, at the very least, for my adolescent with epilepsy, with or without autism. We will talk more about this in an upcoming office hours, when I have a sleep specialist with me

3:46

Doctors furiously typing …

3:47

Comment From Kris

My son is 15 in 10th grade he is diagnosed with Aspbergers and Autisim.I did not know first that these were two separatediagnosis.He is on an IEP track and his test scores are about 9 years behind his current grade level.He functions at a much higher level though and I am wondering how to challenge the schools test scores and to see if he could get a GED to open up opportunities for himself

3:48

Dear Kris – this is Dr. Horrigan – the two diagnsoes are essentially the same thing. We probably need to talk about the specifics of your son’s IEP, but I would want to make sure that he has a range of approriate accomodations when being tested (e.g. untimed tests, verbal over written answers, testing in a carrel or a quiet place, etc). Generally speaking, most adolescents with Asperger’s, if that is the only valid diagnosis, can definitely get a GED and/or go on to post highschool education, whether it is based at a community college or at a 4-year college or university.

3:49

Comment From william

every time i take my 10 year old Autistic son to the Dentist, it takes 2-3 people to hold him down, while checking his teeth. we have yet to have a xray done to see if their is any inside issues that they cant see cuz he struggles. It was suggested it might be time to sedate him. but i’m not sure it is a good idea for a routine check up. Should i suggest a sedation next time so they can do a full check up without worrying about my son struggleing?

3:50

Dear William, I am going to assume that although your son needs additional personnel to go thorugh his dental visit, it is being done in a safe manner, so in general, I would not recommend heavy sedation or general anesthesia to take routine dental radiographs, unless the examination has showed some concerns that need to be addressed, i.e, dental caries, late eruption of permanent teeth, etc, where you would need to take x-rays and provide care. On the other hand if he is geeting too strong for a good examination, I would consider a full evaluation and treatment under general anesthesia so you can get a baseline and be more aware of any possible problems developing, while continuing to work on desensitization and improving his ability to withstand the routine dental procedures in the office. How often to consider general anesthesia will depend on the initial findings and his behavior on follow-up visits, but usually no more than every 2-3 years.

3:52

Comment From Gretchen

How can I get the ATN ToolKit for Dental Professionals? I think it is something that is needed at my office desperately.

My son is 14 and mainstreamed and honor roll. However puberty has hit him hard. He likes girls but they don’t seem to like him because they say he is “weird”. How do I help him through this hard time in his life.

3:55

Dear Suzie – this is Dr. Horrigan. I read your question and it made me wonder if there is any professional in your community that has a reputation for doing good work with regard to providing ‘social coaching’ to adolescents- for example, an occupational therapist with an interest in young people with autism spectrum disorders. I also wondered about the avaiability of a mentor program through one of the local universities or colleges – (e.g. a college age male may be able to provide some useful advice and practical strategies to deal with the range of give-and-take converstaions and interactions that occur in any high school setting). I think that some of the Autism U chapters offer that type of mentoring

3:58

Comment From Gretchen

I have a duaghter with ADHD and a daughter with Aspergers and ADHD. I am a dental assistant. I try to help the office staff understand ASD Spectrums, but when a patient who suffers rom one of these issues is in the office, they are very critical and treat the patient like they have leporsy. How, as a professional and as a parent can I help them understand that this is a common disorder and that there will be a lot more patients presenting with these DX in the future? And how can I get them to react differently without causing a major battle. I work in a very cliquish office. i am the newest staff member. It is a military town in an area that is definitely not military friendly…..

3:59

The Dental Toolkit for dental professionals link above might be a way to start. A lot of communication can usually get fair minded professionals to engage in the discussion and find solutions. It might be that the solution will involve finding a good referral source in your community while considering how to best provide prevention guidance and other minor procedures in your own office. Educating them on the condition and how common it is will certainly help. Important to keep focused, objective and very professional in all interactions. That’s the hard work of being an advocate for your children and others with similar conditions.

My son is 7 and is diagnosed with PDD, up to 3 months ago, my son was only sleeping 3-4 hours of sleep at 1 1/2 – 2 hour intervals. Now he sleeps 6-7 hours and only occassionally wakes up 2 -3 times a night for only a few minutes. With his increase of sleep, he has become more hyper, a lot more short tempered and more aggressive. He doesn’t go to his specialist for another 2 months, are there any types of supliments that I can give him other than just trying to tire him out or trying to keep him calm?

4:01

Dear Dee – this is Dr. Horrigan – if I understand correctly what you have written, your son is sleeping for longer periods of time now, but his overall behavior is not as good. There are no over-the-counter supplements that come to mind immediately. Melatonin is usually only helpful with sleep onset, and it is genrally well tolerated. I am wondering if other rasons may account for your son’s behavior, above and beyond his sleep challenges. That said, your son may ultimately be a candidate for an alpha-2 agonist (guanfacine/Intuniv, or clonidien/Kapvay), to help with sleep continuity, but it is best to discuss this with the speciliast – even if you have to do it over the phone between now and when the next appointment is scheduled.

4:02

Apologies that we can’t get to all your questions. The doctors are trying to answer as many as possible.

4:06

Comment From Cora

My 16 year old son is a high functioning autistic, the schools could not challenge him and were not willing to work with him. While in school he was so stressed that they recommended a psychiatrist and meds. He is fine at home no problems just when attending school. So we took him out of school and have been homeschooling now for 2 years. Also while on his meds he gained weight and was sluggish and very mean tempered. He has been off his meds now for 2 years since the homeschooling began. My concern is that his weight has dropped now and he only weighs 105 but he is 5’6 is this normal?

4:06

Dear Cora – this is Dr. Horrigan – you are right in that 105 lbs is low, and I suspect that it might be related to his limited food choices (?) and/or not having great eating habits (similar to all adolescents). A dietician may need to be consulted. Also, you might want to look at supplementing his diet with protein shakes or protein bars (the prices at Walmart are pretty good). It was probably one of the medicines like risperidone or olanzapine that increased his appetite prviously, but if your son is feeling better now, it is best to avoid those

4:08

Comment From Valerie

When doing research how do you go about choosing people whom you use for studies etc? I am a stay at home mom and we are used to traveling is there a way to participate in research and or studies or how does this work ?

4:09

Hi, this is Dr. Polido, I have to sign off now. Thank you for the questions, I hope I was able to help. The most important thing I can leave you with is to encourage good communication with your dentist in regards to the various treatment options available. Early start in prevention and maintaining a healthy routine at home in regards to oral hygiene and diet will usually pay off in the long term. Best regards to all of you!

4:11

Valerie … answer coming from Dr. Joe …

4:11

Dear Valerie: this is Dr. Horrigan – I have to leave in a moment, but we have been talking here at Autism Speaks about better ways to let parents like yoursef know about what opportunties are present at any given moment, in terms of participating in reserach. One of the things that I do a few times a week is to look at www.clinicaltrials.gov, and I enter all of the various terms for autism into the search field, and then i look t the sites that are listed, so that i have a general sense of where the research is occuring, so i know what to say to parenst that live in a specific state or town …

Dear families – this is Dr. Horrigan – thank you so much for writing in all of your questions. I am sorry that we weren’t able to get to them all today, but we will be back next month, so please attend that if you can find time in your schedules. Thanks again! take good care

4:14

On behalf of all of Autism Speaks. Thanks so much and please forgive us for not being able to get to all your questions. You can also send us questions in advance for the next chat. Our email issciencechat@autismspeaks.org.Please join us again on the first Thursday of next month – April 5th at 3 pm ET/noon PT. Dr. Dawson will be back along with guest host gastroenterologist and autism specialist Alessio Fasano, M.D., director of the Center for Celiac Research at the University of Maryland School of Medicine.